As an intersex person, Alicia Roth Weigel knows that biological sex is more complicated than two boxes on a birth certificate.
« Intersex people are born with physical traits that don’t fit neatly into a ‘masculine’ or ‘feminine’ box, » says Weigel. « We have combinations of hormones, chromosomes, internal reproductive organs, external genitalia that just don’t quite fit into one of those two binary options you were taught in elementary biology class are the only options. »
Weigel, who identifies as she/they, was born with androgen insensitivity syndrome — a condition in which a person has both X and Y chromosomes, but does not respond to male hormones. Although Weigel presented as female at birth, tests of her revealed that she was missing her uterus and ovaries and had internal testicles.
Citing the risk of testicular cancer, Weigel’s doctors convinced her parents to have her testicles surgically removed, but Weigel now says the cancer risk was overestimated and that having her testicles removed as a child led to complications later in life.
« By removing my testicles, they basically put my body on artificial hormone withdrawal and didn’t give me any new hormones until a certain age, when they decided it was time to induce puberty on my body, » she says. « Puberty that would have occurred naturally on its own if they had left my body intact. »
An advocate for intersex rights, Weigel is one of three intersex people featured in Julie Cohen’s documentary Everyone. Cohen co-directed (along with Betsy West) the documentaries RGB, Giulia AND Gabby Giffords won’t back down. She says Everyone was inspired by the story of David Reimer, a Canadian man whose botched circumcision led to him being castrated as an infant and raised as a girl.
Although the sex researcher who treated Reimer argued that a child’s gender was malleable until age 2 or 3, Cohen says Reimer’s case ultimately proved otherwise. Over a period of time, he assumed a male gender identity, began taking male hormones, and eventually underwent surgery to reconstruct a penis.
« David has always felt uncomfortable [as a girl] and even went so far as to always try to urinate standing up because he actually knew he was a boy,” Cohen says. “Eventually, the parents broke down and told him the truth. … They thought he would be horrified by this information. In fact, he was incredibly relieved that now his whole childhood made more sense to him. »
Highlights of the interview
On the notion that biological sex exists on a spectrum
Alicia Roth Weigel: I think society understands at this point that sexuality is a spectrum. Some people are gay, some are straight, many are somewhere in between. And society is also starting to understand that gender is a spectrum, that you’re not just a man or a woman, but there’s a lot in between as well. What society hasn’t learned yet is that sex is a spectrum, too. … « Intersex » is really an umbrella term. It includes a wide variety of combinations. But what we all share is that our anatomy doesn’t fit neatly into a binary box.
On the growth of intersex
Weigel: I was told I had an issue that was being fixed and I should never tell anyone about it. … I was told I had testicles that could become cancerous, which is why they were removed. And that was part of this pathological syndrome that I should never tell anyone about, because it’s shameful. …
I’ve felt like a monster all my life. And that led me to a number of different behaviors to « compensate » for being a monster. On the plus side, I became a tri-varsity athlete. I got stellar ratings. I went to ivy league school. I did all of the extracurricular to try and prove to the world that I was worthy of love, because I basically didn’t believe that based on how I was raised. Those are the positives. The downsides were that I started abusing many different substances at a very young age, and this was to try and erase these feelings of shame and isolation that I had. And having to lie to the world about who I was.
Undergoing surgery to remove her testicles as a child
Weigel: What we know now, looking at the data, is that my risk of getting testicular cancer was only between 1 and 5%, and much later in life — that cancer never occurs in childhood for people born like me, or very rarely, if ever. And so, due to a 1 to 5% cancer risk, they decided to remove my hormone-producing organs without asking me. And the other kicker is your testicles or your ovaries, they do a lot more than control how you develop in terms of your gender traits. They can monitor things like bone density, how your organs develop in a variety of different ways. … And from [removing my testes], as my body was in hormone withdrawal, it started leaching calcium from my bones. … And so essentially, trying to fix something that wasn’t even broken, they made problems. Trying to fix me, they broke me. …
There are big organizations, like the United Nations, that he defines these interventions as torture. … Genital mutilation is not something that happens only in distant tribes in Africa. It happens every day in accredited hospitals across the United States. Yet society has such an aversion to curiosity, rather than « altering » something that is different, by embracing and learning about it. And this is where my anger lies. It is as if we are to teach our children, who will eventually become adults, that we are to remain curious and open-minded, be open to learning, and be open to love. Because only then will these interventions really stop. And only then can intersex children be raised as who we really are.
About how David ReimerThe case was used to justify surgery on intersex infants
Coen: This actually impacted the medical literature and the entire study of intersex children, because this case, although David Reimer was not intersex, this case was used as evidence, as a justification for performing surgery on intersex children . For example, if you can turn a boy into a girl through surgery, then certainly you can take an intersex child somewhere on a spectrum and raise that child as a girl and they can be happy and healthy. That was not true in this test case either. But that… false interpretation has spread quite widely enough. And this case was used as a justification for [surgery] on intersex infants and children.
On how current legislation targeting the trans community impacts the intersex community as well
Weigel: The unfortunate part is that the world still doesn’t know what intersex means. And so when they read these bills, they don’t know what that means. But we are explicitly written into all these anti-trans health laws across the country. These laws say: deny surgeries and hormones to trans people who ask for them with consent. But you can continue to force those exact same surgeries and exact hormones on intersex children who are not only too young to consent, but too young to speak. …
So unfortunately intersex is the order of the day. A common misconception I like to correct is that Republicans actually know a lot about intersex individuals because they wrote about it in their bills targeting the trans community. So, unfortunately, the Republicans have done their homework. They know there are intersex people and they are actively targeting us. Democrats sadly don’t, and they don’t even know we exist to protect ourselves. So I like to clear up this misconception because one side has done their homework and is using it to harm us. The other side has to do its homework to protect us from those who try to harm us.
Heidi Saman and Seth Kelley produced and edited this interview for the broadcast. Bridget Bentz, Molly Seavy-Nesper and Carmel Wroth adapted it for the web.